#explaining chronic illness

[i-say-stupid-things]

i’m gonna hold your hand with a glove on when i say this

when disabled/chronically ill people tell you they can’t do something, then that is not your cue to tell them that they can actually or that they’ll always find an excuse if they’re looking for one.

when a disabled/chronically ill person says they can’t do something, sometimes that doesn’t mean it’s outside the realm of possibility, sometimes it means if they (attempted to) do that, they will seriously hurt themselves.

when a disabled/chronically ill person says they can’t do something, sometimes it’s preventative care, and they refuse to do that thing to prevent a flare up from happening/their symptoms getting worse in the first place.

disabled/chronically ill people are not “looking for excuses”, they are giving you reasons why. something they don’t even have to do! so maybe just accept the reasons they give you.

[dissociacrip]

the worst thing about discovering more and more body problems that all went neglected over the years is that you start getting overcome by the insatiable urge to beat the heads in of people who did the neglecting with a brick

[not-poignant]

sometimes the chronic illnesses are just really exemplary at being both chronic and illnesses and i wish they'd try a little less hard

[deplcythebattery]

why are functional disorders not seen as real? why is the functional part what makes people think it's not real? i'm autistic and struggling to grasp why the word functional means not real to a lot of people. like. it's a functional disorder. it affects functioning. why is that not a big deal? why does that make it not real like other disorders that aren't labeled functional disorders?

also why does it not count as a real disability if it's functional?

edit: there's a really good reply in the reblogs from @ciderjacks if others are wondering this too!

[salt-baby]

at some point in disability you stop wanting to "get better" and this is just really hard for able bodied people to understand for some reason

[tumble-tv]

Guys I'm finally getting smart crutches after scrounging enough money up. I'll finally gave crutches that won't fuck up my wrists.

[acid-lovecore]

For the folks with chronic pain/illness/fatigue

Your F/o checking in first thing in the morning to see how your feeling. If you slept ok, if your back or hips or neck or anything hurts. Offering to massage wherever it may be sore. Taking extra care to avoid tender spots.

Gently clicking their tongue at you when you exhaust yourself cus you overdid it on a low-pain day and are now flaring up. Carrying you (if they can) to bed, already having your heating pad prepared. They make sure you stay hydrated, fed, and fetching you things when walking is just too hard.

Your fatigue or pain does not make you any less loveable. It does not make you harder to love. They do not think you are faking it nor that you are lazy. Everyone’s body is different, and every body should get that chance to feel accommodated. They love you through your pain, your tiredness, your everything

[doe-eye-oswald]

I feel like we (and the show itself, but that's a given) don't aknowledge enough how fucked up the deaging is for Mary specifically. Like, this is a whole ass adult woman with an established career, and a wife, a mother etc

Like yeah, it ruined Shinichi’s life too, but he ‘just’ lost a decade. He essentially went from the end of his school life to the beginning, from almost adult to young child again. He was basically still at the beginning of his life.

Meanwhile, Mary is 53 years old with a husband and (almost) three adult children!

And now she's lost 40 whole years of her life, is younger than her youngest child and pretty much dependent on her.

[demiboydemon]

Sometimes I forget my gender is on the nonbinary spectrum (genderflux demiboy) and I think, “wow, this nonbinary person’s feelings and experiences are so similar to mine, more so than binary trans people’s” then I remember yeah. Because I’m not a binary trans guy. How do I keep forgetting this?

[blenselche]

how I have to explain Fern to my friends who only like early season AT is truly ridiculous:

"Finn bought him for pocket change when he was stuck in a sword and then he got stuck in Finn's arm, but then he ate another Finn stuck in a sword and that got him stuck in a Finn again and now he's stuck in a sword that's stuck in a tree. He gets stuck a lot."

[tonitheloftwing]

Something weird abt being chronically ill is that sometimes you learn that there is a word for one of your symptoms that you thought was just kind of weird but not actively a sign of anything else. But then you find out the word for the symptom and you’re like. Oh shit I think I just unlocked an entirely new set of things that could potentially be wrong with me

[anotherdragon]

"So yeah I've been dealing with extreme fatigue every single day to the point that I can barely function and always feel like Im on the verge of passing ou-

My doctor: did you get enough sleep 😊 did you get enough sleep 😊 did you get enough sleep 😊 did you get enough sleep 😊 did you get enough slee

[toaverse]

Look, I'm very much against cults as much as the next guy, and haven't heard a single case of a cult-leader not being a terrible piece of shit who should be thrown under the jail.

But the fact that the closest thing to a safe and thriving society in Zaun is a fucking cult where the healed people apparently don't even have a brain anymore, really rubs me the wrong way.

Especially since Viktor was genuinely helping people, like shimmer addicts, the disabled and the sick, or at least had genuine good intentions!

[not-poignant]

Hi Pia,

I just wanted to say you are an inspiration to me. I'm in my twenties and also struggling with an insane amount of health issues with new ones constantly popping up, which makes me feel like I will never be able to do anything with my life. Except maybe for writing, because I can do that in my bed and I love escaping into fictional worlds.

I don't know much about your life except what you share in the author's notes, but knowing that you're living life out there and writing these amazing stories despite all your health issues gives me hope. Unfortunately I live in the US, so it's easy to fall into a spiral of doom, but maybe I can be like you one day. The choices you make every day to keep pushing forward, keep doing things that make you happy, is what makes me believe that it's possible for me to keep going, too.

Hiya anon,

Health issues suck, don't they? I started my Crappy Pokemon Collection of Chronic Health Issues in my teens but I remember I really started to get concerned in my 20s when it just kept happening. And kept happening. I think there's a sadness/grief and depression and anger that comes with that too, and a fear.

For what it's worth, science comes up with new medications all the time, new discoveries, new breakthroughs. I have started medications that have helped some issues I've had for 25 years, thinking they'd just progressively get worse. And to be fair, some of my issues do progressively get worse, and I do have new chronic illnesses or chronic or stupid health things come up fairly frequently. And as I'm sure you know, maintenance and surveillance and chasing this shit up is its own job and labour that is extremely thankless.

But outside of that, there is a great radical activism in simply being kind to yourself, loving yourself, trying hard not to see yourself as wrong in the world, as still deserving to take up your space, no matter how much that changes over time.

I have loved ones in my life who spend most of their time in their bed (and otherwise in a wheelchair), all in their 40s/50s, all who have rich lives filled with loved ones. That doesn't mean they're not sad sometimes, or not frustrated with an ableist world (especially around how quickly everyone gave up on us), but it does mean when everything feels awful and despair-filled, they have people who love them, they have hobbies and interests (game coding can be done from a bed, art can be, cross-stitch can be, writing can be, and even sometimes chopping fruit and vegetables can be if you have one of those sturdy overbed tables and can trust your hands), they have things that get better and things that get worse, they all think their lives are better now because it does just take time to...learn how to live in a body that does this when you're younger and had different visions for yourself.

I spend a lot of my time in bed. I need to lie down every afternoon for several hours or I'm non-functional in the evenings and that's on my best days. Escaping into fictional worlds is honestly such a blessing, whether it's in writing or movies or TV or anime or manhwa etc.

Sending hugs and solidarity and much love for how things are in the USA right now, especially for ill / disabled folk. There are lot of people fighting the good fight, so please make sure you take the time to rest, even on the good days, when you might be tempted to push past your limits to get everything done.

It took me forever to stop overspending energy on my good days, and I still do it all the the time, lol.

[thornsinpudding]

One thing I'm so torn on is like doctors not diagnosing unless absolutely neccessary because what do you mean my doctor actually treats me like a person and has me on a treatment plan (that isn't just medicine) but he won't put the diagnosis on my record right this instant???

I like him but my ocd can't take this I fear

[h0oty]

doctors deciding whether to blame their patients symptoms on anxiety, weight, or menstruation this time around